Today’s post is probably going to be a little on the odd side as this is, I think, a niche experience. I hope it’s a niche experience because it wasn’t a very pleasant one.
If you’ve followed me for any length of time on social media, you may have seen me post about how my eczema used to be really bad until I started taking Dupixent in 2020, and it finally was brought under control. When most people think of eczema, they think of a crusty, red patch on someone’s arm or the back of their leg, but I had severe eczema. What qualifies as severe eczema? Treatment resistant, over a significant portion of your body, impairs quality of life, and flares last a long time. I had all of that.
As soon as I hit puberty around 11, the eczema patches that were on my arms and legs basically took over my entire body. I had angry, red skin that weeped over most of my body, and at the time, the doctors prescribed cream, which helped but wasn’t enough to bring down the internal inflammation. Steroid pills helped while I took them, but within days of stopping a course of steroids, the eczema came back worse. Nothing I did worked, no amount of avoiding triggers was enough. My body was raging from the inside out, and I was consumed by pain and fatigue.
It feels so dramatic to say that, but until I felt better, I didn’t realize how awful I felt at the time. My skin cracked and burned constantly. The inflammation made me exhausted (like having HORRIBLE allergies or a cold 24/7 for weeks or months on end). And my self-confidence plummeted because I looked and felt ugly. I didn’t bother to try to cover up the open wounds on my face because makeup made it more irritated. Between not having enough spoons to care and fighting a loosing battle with my skin, I gave up on giving a shit about how my face looked and stopped looking in the mirror beyond checking specific body parts (teeth, eyes, nose, etc.).
Even the clothing I wore required me to work around my eczema. I wasn’t hiding it so much as covering it in fabric that could act as a wick for sweat. In summer, I ended up wearing long-sleeve t-shirts or light hoodies and long pants because when the open wounds were exposed to the air or sweat on a hot day, they burned and got more inflamed. I was never someone who enjoyed showing skin, but what I wanted to wear and what I could wear didn’t always align. The open wounds also liked to bleed at random, so I ruined many a t-shirt that way.
When I started taking Dupixent back in 2020, I was hopeful but skeptical. My dermatologist was convinced it would help me, and I wasn’t opposed to trying an expensive medication if my insurance was willing to cover it since nothing else worked. Shockingly, it worked incredibly well. Within weeks of starting, there was marked improvement on several fronts. It turns out what I thought was a deviated septum making it hard to breathe was inflammation in my sinuses. The Dupixent calmed my whole body. My skin cleared up, my sinus passages deflated, and my asthma has all but cleared up. I no longer sound like Darth Vader when I breathe (thanks, family, for pointing that out repeatedly when I couldn’t control it). I had no idea how miserable I was since I had been suffering with such heavy inflammation for over 18 years, but now that it’s better, I can’t imagine going back to feeling that shitty. At this point, I’m paranoid about my insurance no longer covering my meds, but a post on the failings of the American healthcare system is for another day.
Now, here comes the weird dilemma: I didn’t know what my face really looked like.
I can hear some of you now. “Kara, you had a mirror, and no one swapped out your head when no one was looking.” Yes, but I have literally had eczema covering my whole face since I was 11 years old in 2002. I never really understood what my adult face looked like with clear skin and without heavy inflammation, which causes your face to look puffier than it is. My face shape has changed, my nose looks different, my skin (obviously) looks different, and now, when I stare at my face in the mirror, I have to remind myself to zoom out and see my face as a whole rather than parts. When I try to do a Tiktok or take a selfie, my brain still rebels at seeing my face. It’s simultaneously closer to the person I have in my head and incredibly jarring because I’m not used to seeing it like this. I’m not the person who is riddled with eczema and miserable. I still have inflammatory problems that like to pop up (stiff or achy joints, the occasional small eczema patch, IBS), but my quality of life is so much better that it’s painful to think of how many years I wasted feeling horrible. Not that, that could have been helped without access to Dupixent.
So, now, I’m thirty years old, and trying to figure out my face and get used to it. I’m happy that I have so many trans friends because I think they understand this feeling of suddenly not recognizing yourself but also being happy with the results. In their case, it’s hormones. In mine, it’s a lack of inflammation. I think it helps, too, that I’m nonbinary, and I don’t feel the need to cram my face into a feminine box because it certainly doesn’t fit. The other day, I made a goofy face, and my partner looked at me and was like, “You have a nice face. Your face looks very neutral, like not too girly or masculine.” Somehow, that made my day because, ultimately, I fall somewhere in the middle. Having my body cooperate with that feeling for once in its itchy, angry life still feels strange, but I’ll take the weird small victories.